10
Sep

30 THINGS ABOUT MY INVISIBLE ILLNESS YOU MAY NOT KNOW 

1. The illness I live with is: Myalgic Encephalomyelitis a.k.a Chronic Fatigue Syndrome, Postural Orthostatic Tachycardia Syndrome, and EDS Type 3

2. I was diagnosed with it in the year: I was diagnosed with ME/CFS in April or May of 2011 and POTS in November of 2011 and EDS in June of 2012

3. But I had symptoms since: August 2010

4. The biggest adjustment I’ve had to make is: I feel like school has been the biggest adjustment for me… it really put me off track. I was in a lot of advanced courses when I got sick when I was in 11th grade… I was in English Honors, Advanced Trig, French 3, etc…

5. Most people assume: that I don’t try hard enough. That I’m just making excuses…

6. The hardest part about mornings are: waking up. Forcing myself to shove tons of pills down my throat. 

7. My favorite medical TV show is: I don’t watch a lot of TV but I do like Grey’s Anatomy (I know it’s more of a drama but yeah.)

8. A gadget I couldn’t live without is: my iPhone. 

9. The hardest part about nights are: getting to sleep. 

10. Each day I take __ pills & vitamins. I don’t know probably 15+

11. Regarding alternative treatments I: have tried a lot of different things. I’ve tried chiropractors… I’ve tried weird laser therapies, I’ve tried infra-red blah blah blah. Right now the only “alternative” thing I’m doing is supplements but that’s becoming more mainstream as time goes on. Plus I think they do help.

12. If I had to choose between an invisible illness or visible I would choose: Invisible. I decide who knows and even though it sucks to “look fine”, I like that I can go on about my business without people pestering me. 

13. Regarding working and career: I have a part time job right now with ProHealth. They are an awesome company and I get to help other people with CFS or Fibro and it’s really an incredible opportunity. I’m so thankful to have this job. I get to set my hours and everything. I work really hard though.

14. People would be surprised to know: that I was an allstar softball athlete before I got sick. 

15. The hardest thing to accept about my new reality has been: somewhat missing out on normal college life. I only take one class on campus… I don’t live on campus, I commute. I feel a little left out of the fun. 

16. Something I never thought I could do with my illness that I did was: At one point, I built up my endurance and strength to the point where I tried out for my high school’s softball team again and I did it… and I was the starting pitcher for them. Until I started crashing. I’m still really proud of that though. Plus it gives me the opportunity to tell any jerk of a doctor that I tried conditioning and exercising to get better and it worked for a short amount of time before I relapsed and became so freaking sick I could barely move. So exercise didn’t cure me. 

17. The commercials about my illness: Non-existent.

18. Something I really miss doing since I was diagnosed is: taking long walks outside… spending the whole entire day out with my friends and having the best time without getting tired or overheated.

19. It was really hard to have to give up: softball… ): I know I keep repeating it and I talk about it pretty much all the time when I reminisce about my past but it meant so much to me. It was my way of getting away from everything and I knew I was good. I had so much confidence when I was on the field. I felt invincible when I played. 

20. A new hobby I have taken up since my diagnosis is: blogging, I play guitar more often, experimenting with make-up, etc. 

21. If I could have one day of feeling normal again I would: that is such a good question. Maybe pitch one more game of softball… just one more game. 

22. My illness has taught me: Not to take things for granted. Also not to let this illness get in the way of my dreams. 

23. Want to know a secret? One thing people say that gets under my skin is: “you know, if you improved your diet you’d start to feel a lot better.” 

24. But I love it when people: tell me that it’s going to be okay. That I’m a strong person. 

25. My favorite motto, scripture, quote that gets me through tough times is: "You never know how strong you are until being strong is the only choice you have."

26. When someone is diagnosed I’d like to tell them: It’s not going to be an easy journey, but I am here for you. There’s a huge community of people that are here for you that will support you through your hardships and your successes. 

27. Something that has surprised me about living with an illness is: I’ve really gotten to know myself as a person better. 

28. The nicest thing someone did for me when I wasn’t feeling well was: send me a message telling me that they know how I feel. 

29. I’m involved with Invisible Illness Week because: I love being involved in anything regarding CFS/ME. I really do hope that one day we will find a cure for this horrible disease so all the people ridiculed by their doctors, family and friends can finally feel validated!

30. The fact that you read this list makes me feel: flattered. (: 

18
Aug

The “Obama Promise” Fulfilled: Obama Requests NIH Elevate Priority of Chronic Fatigue Syndrome
by CORT on AUGUST 17, 2012


President Obama responds positively to a request for more federal assistance for chronic fatigue syndrome

Bob and Courtney Miller’s effort to engage President Obama  on behalf of Chronic Fatigue Syndrome  patients began in a Town Hall meeting in Reno last year. At that meeting President Obama promised to look into the situation and report back and, now, through his Deputy Chief of Staff, Nancy-Ann DeParle, he has.
The top aid to the White House Chief of Staff,  Nancy-Ann DeParle has a long track record with health care; as Director of Health Care Financing for the Clinton administration she helped administer the Medicare and Medicaid  programs and then was director of the White House Office of Health Reform for President Obama.  A Phi beta kappa and Rhodes scholar, Mrs Deparle was recently included on The New Republic’s list of Washington’s most powerful and least famous people.
 Mrs. DeParle told Courtney that President Obama had never asked her to investigate a specific disorder before. No promises were given regarding funding but President Obama’s desire to elevate the priority Chronic Fatigue Syndrome receives at the NIH (in a separate communication to Courtney) was promising.
Read the letter from President Obama to Courtney here.
From Bob and Courtney Miller
“In an unprecedented step, President Obama has asked the National Institutes of Health and the Department of Health and Human Services to elevate Chronic Fatigue Syndrome in priority, assigning his Deputy Chief of Staff to follow their efforts. When President Obama promised Courtney Miller to “see if they could do more” for CFS research at a Reno Town Hall meeting last year, he was the first U.S. President to say the words Chronic Fatigue Syndrome. Now he has lived up to his promise, becoming the first President ever to ask the nation’s health agencies to elevate the priority of CFS! Thank you, President Obama!
In a July 25, 2012 letter addressed to Mrs. Miller, President Obama describes a report given him by Dr. Francis Collins, Director of the National Institutes of Health. The important part of the letter is the last paragraph which speaks to the future:  he has asked his Deputy Chief of Staff for Policy, Nancy-Ann DeParle, to “stay in touch with Dr. Collins at NIH and Dr. Koh at HHS about my interest in their efforts on CFS.” Mrs. Miller’s communications with the White House confirms that the President’s wish to have CFS elevated in priority in the Department of Health and NIH has been conveyed at the highest level.
“President Obama kept his promise in the most important way he can for CFS/ME patients,” said Courtney Miller, “by leading a stronger federal commitment to CFS/ME research and a better quality of life for patients. CFS is a health crisis for more than 1 million Americans, and President Obama has thrown in on our side!”
Source: Phoenix Rising ME/CFS website: http://phoenixrising.me

The “Obama Promise” Fulfilled: Obama Requests NIH Elevate Priority of Chronic Fatigue Syndrome

by CORT on AUGUST 17, 2012


President Obama responds positively to a request for more federal assistance for chronic fatigue syndrome

Bob and Courtney Miller’s effort to engage President Obama  on behalf of Chronic Fatigue Syndrome  patients began in a Town Hall meeting in Reno last year. At that meeting President Obama promised to look into the situation and report back and, now, through his Deputy Chief of Staff, Nancy-Ann DeParle, he has.

The top aid to the White House Chief of Staff,  Nancy-Ann DeParle has a long track record with health care; as Director of Health Care Financing for the Clinton administration she helped administer the Medicare and Medicaid  programs and then was director of the White House Office of Health Reform for President Obama.  A Phi beta kappa and Rhodes scholar, Mrs Deparle was recently included on The New Republic’s list of Washington’s most powerful and least famous people.

 Mrs. DeParle told Courtney that President Obama had never asked her to investigate a specific disorder before. No promises were given regarding funding but President Obama’s desire to elevate the priority Chronic Fatigue Syndrome receives at the NIH (in a separate communication to Courtney) was promising.

From Bob and Courtney Miller

“In an unprecedented step, President Obama has asked the National Institutes of Health and the Department of Health and Human Services to elevate Chronic Fatigue Syndrome in priority, assigning his Deputy Chief of Staff to follow their efforts. When President Obama promised Courtney Miller to “see if they could do more” for CFS research at a Reno Town Hall meeting last year, he was the first U.S. President to say the words Chronic Fatigue Syndrome. Now he has lived up to his promise, becoming the first President ever to ask the nation’s health agencies to elevate the priority of CFS! Thank you, President Obama!

In a July 25, 2012 letter addressed to Mrs. Miller, President Obama describes a report given him by Dr. Francis Collins, Director of the National Institutes of Health. The important part of the letter is the last paragraph which speaks to the future:  he has asked his Deputy Chief of Staff for Policy, Nancy-Ann DeParle, to “stay in touch with Dr. Collins at NIH and Dr. Koh at HHS about my interest in their efforts on CFS.” Mrs. Miller’s communications with the White House confirms that the President’s wish to have CFS elevated in priority in the Department of Health and NIH has been conveyed at the highest level.

“President Obama kept his promise in the most important way he can for CFS/ME patients,” said Courtney Miller, “by leading a stronger federal commitment to CFS/ME research and a better quality of life for patients. CFS is a health crisis for more than 1 million Americans, and President Obama has thrown in on our side!”

Source: Phoenix Rising ME/CFS website: http://phoenixrising.me

3
Aug

Dr. Susan Levine 

So everyone! I have a lot to update you all on! I made the trip up from Georgia to stay in South Jersey with my Grandma so I could go see Dr. Levine in New York City. Today I went and saw her and it could not have gone better!

She looked through my previous blood work and noted that my Epstein Barr virus titers were high. My HHV 6 levels are also high. So we discussed what lead to my diagnosis, you know all that general info and then we talked about treatments! She wrote me scripts for low dose Naltrexone, Valcyte, supplemental IV’s, and I forgot the last thing. Haha.

But anyway, I knew the EBV was an issue but I didn’t really know too much about the HHV 6 until I looked it up! Apparently…

HHV-6 can persist in the brain tissue long after primary infection and after evidence of the virus has long disappeared from the plasma in the circulating blood.  Therefore, direct evidence of chronic infection is not easily attainable by standard laboratory tests. In other words, even though there is no DNA for HHV-6 (or other herpesviruses such as EBV) in the plasma, it is possible that one of more of these viruses are in fact smoldering in the tissues and throwing off inflammatory cytokines.


So I thought that was interesting! 

Oh and I got a photo with Dr. Levine because I’m weird like that. She’s awesome though, and if you have CFS/ME and have the chance to see her, I’d definitely recommend her. She knows her stuff. 

Excuse how incredibly flushed and puffy my face is. Also no makeup, because who wears makeup to the doctor? Yeah. 

Anyway, that’s how that all went. I’ll keep everyone up to date on how I do on the valcyte, naltrexone, and the nutritional IV’s!

(Source: hhv-6foundation.org)

13
Jun
Tune in to The CFSAC Meeting. Live Streaming Video Today!

WHEN:

9:00 am – 5:00 pm EST
Wednesday and Thursday, June 13 - 14, 2012

WHO:
Join the Chronic Fatigue Syndrome Advisory Committee (CFSAC) as they discuss the current issues of chronic fatigue syndrome. Dr. Howard K. Koh, Assistant Secretary for Health, will administer the oath of office to four new committee members on June 13, 2012.

Guest speakers will discuss childhood chronic fatigue syndrome and include Peter C. Rowe, M.D. Professor of Pediatrics at the Johns Hopkins Children’s Center and Gail Houle PhD. Associate Division Director, Office of Special Education Programs, Department of Education.

LiveStream Link  http://www.hhs.gov/live/

Learn more at http://www.hhs.gov/advcomcfs/

2
May

May 12th is right around the corner!!! 

Hey ME/CFSers! (Yeah, I don’t know how to address all of you! xD Sorry! )

May 12th isn’t too faraway now! I know lately this blog has been a bit drab and boring with the weird 90s videos that my mother has been posting. (They really are helpful, I promise!) But hey! Get out there on May 12th!

The internet is our oyster people!

  • Post a FB banner on May 12th like this one:

  • Tweet informative ME/CFS videos.
  • Pin ME/CFS related things to a board on Pinterest.
  • Post on Tumblr!

Just get the word out somehow! We need more recognition of this terrible disease if we want to get closer to a cure.